I spoke with John’s Hopkins this morning about where we stand in respect to Gavin being seen. Apparently, they got a large part of the records needed but they are missing the case notes.
The case notes are a big deal.
I email release forms to the Cleveland Clinic today and hopefully, they should have the records fax over within the last week or so.
It’s not really a question of if we are taking Gavin across several state lines to be seen by the best hospital in the country, it’s more a matter of how and when.
If Gavin is going to be seen in the AT clinic, we will approach this whole thing in a certain way.
However, if Gavin‘s going to be seen outside of the AT clinic, we will take a completely different approach.
I have no idea how we are going to pull this off.
It’s roughly a 7 hour drive and so it will likely be a trip we spread out over several days. I also don’t know if all the appointments would be on the same day or spread out over a few.
All I do know for sure is that both Akron Children’s Hospital and the Cleveland Clinic agree that this is the next stage of our journey with Gavin.
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Good luck!! This has been so hard for your family but anything is better than nothing and I know you’ll figure it out when the time comes. Fingers crossed for progress instead of set backs!